The NutriQoL ® questionnaire for assessing health-related quality of life (HRQoL) in patients with home enteral nutrition (HEN): validation and fi rst results

Abstract

Health-related quality of life (HRQoL) provides a global view of the state of health of a patient receiving home enteral nutrition (HEN). To evaluate the HRQoL of patients receiving HEN using the NutriQoL®questionnaire, a specific instrument regardless of the underlying disease and route of administration. Observational, prospective and multicentre study conducted in the context of the validation and assessment of the NutriQoL®questionnaire's psychometric properties. One-hundred-and-forty individuals [disease: cancer (58.6%), malabsorption and other (27.1%), neurological (13.6%); HEN: supplement (61.4%), sole source of nutrition (35.7%); administration route: oral (54.3%), ostomy (31.4%), nasoenteric tube (12.1%)] participated. NutriQoL®was reliable [ICC: 0.88 (95%CI: 0.80-0.93); Cronbach's α: 0.77 (1st visit) and 0.83 (2ndvisit)], valid (significant Rho), lowly sensitive to changes (effect size 0.23), can be completed by either patients or caregivers (ICC: 0.82). The mean HRQoL (SD) with NutriQoL® was 14.98 (14.86), EQ-5D tariff: 53(0.25), EQ-5D VAS: 54.15 (20.64) and COOP/WONCA charts: 23.32(5.66). HRQoL with NutriQoL® was better (p < 0.05) for oral HEN [19.54 (13,23)], than nasoenteric tube [14(11.71)], ostomy [7.02 (15.48)]; administered orally [19.54 (13.23)], than by gravity [10.97 (14.46)], pump [8.5 (19.78)] or syringe bolus [7 (11.40)]; as a supplement [19.33 (13.73)] instead of sole source of nutrition [8.18 (14.23)]. NutriQoL® is valid, reliable, even if lowly sensitive to change, and useful to measure HRQoL in this population. More studies are needed to know HRQoL in routine practice.